Have You Ever Been Denied a Diagnosis And Told That Your Pain is Psychosomatic? Part Two

Note: This is part two of a two part story. Don’t forget to go back and read part one!

Meghan O’Rouke, the author of the NYT best-selling book Invisible Kingdom, recently released an excerpt from her compelling story to Elle Magazine.

The following is an excerpt from The Invisible Kingdom: Reimagining Chronic Illness. It is her personal story about the type of diseases that baffle doctors and leave patients with undiagnosed life-threatening illnesses.

Meghan reveals how difficult it was, and still is, to relate the story of her illness. She begins by explaining that she first noticed strange sensations in her twenties and thirties. She had night sweats, vertigo, and hives along with other symptoms.

Her doctors were reassuring and told Meagan that her lab tests were fairly normal, although she was slightly anemic. However, they reminded her that every patient has a few abnormal issues. Meghan agreed that she had a heavy work schedule, and that she had been feeling the pressure.

At age thirty-five when Meghan returned from a trip to Vietnam, things took a turn for the worst. She had developed a severe rash on her arm. However, it took years before she accepted the fact that she was really ill and needed more accurate medical advice.

Meghan finally acknowledged that she had been unwell since 1997. She could no longer ignore symptoms such as severe fatigue and brain fog.

When Meghan began searching for answers, she was received with skepticism by some doctors but was also treated with compassion by friends, other clinicians, and colleagues. She attempted many therapies, but her illness worsened.

Meghan realized that even though there remains much to be learned about cancer and heart disease, they are at least well defined and considered “real.” She lists many disorders in the “silent epidemic” that have been contested and unrecognized such as autoimmune disease, myalgic encephalomyelitis (chronic fatigue syndrome), and Lyme disease syndrome – just to name a few. Meghan also believes that long COVID will soon join the list of “mysterious” illnesses.

In 2012, Meghan became seriously ill. Her illness seemed to fit the category of a disease caused by mental illness. At that time patients with a mysterious illness had to make every effort to legitimize their condition.

But ten years later, just about the time she had finished writing The Invisible Kingdom, everything looked different. Autoimmune diseases became the subject of clinical trials.

Subjects such as gut health and the microbiome became mainstream. COVID-19 has opened a window to the way the human response to an infection can unleash after-effects often activated by our immune system.

Yet Meghan points out that so many people such as herself are still dismissed by their doctors. Their symptoms continue to invade their bodies, and their lives are dramatically shortened because their test results appear to be normal.

The Way It Was

Meghan notes that years ago doctors considered

  • Multiple sclerosis to be caused by hysteria
  • Tuberculosis to be the disease of romantic young people (until scientists found the bacterium causing it)
  • Certain types of cancer to be caused by repressed emotions

Meghan points out that today we may think that things have changed, but research reveals that these views still exist. She hails advances in mental illness as one of the 20th century’s great medical successes. Yet the barrier to adequate care still exists. If an illness has no name, it cannot be studied or treated.

Looking Forward

Meghan was eventually diagnosed with Lyme disease and Ehlers-Danlos syndrome, a connective tissue disease. Having received proper treatment, although she has not fully recovered, has allowed her the energy to enjoy life with her family again.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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